Palliative care is specialized medical care for people with serious illnesses, focused on providing patients with relief from symptoms, pain, and stress of a serious illness – regardless of diagnosis. The goal is to improve the quality of life for both patient and family. Provided by a team of clinicians and specialists who work with the patient’s regular physicians to provide an extra layer of support, it is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
By Diane E. Meier, MD
Palliative care is a stunningly successful way to help people with serious illness, and their families, to have the best possible quality of life for as long as possible. Palliative care relieves the pain, symptoms and stress of a serious illness. It helps families- the caregivers- just as much as patients. It helps people stay well enough to avoid hospitals and their many associated risks. In several studies, people who get palliative care at the same time as treatment for their disease actually live significantly longer than people who only get the disease treatment. The theory is that palliative care helps you live longer because being comfortable, keeping your spirits up, feeling like you are in control of your life because you are at home, knowing that your family is supported, and importantly, avoiding the infection and other risks associated with being in a hospital all adds up to more time on the planet.
In only 10 years, more than 90% of America’s big hospitals, and 2/3rds of all U.S. hospitals have palliative care teams. Why such rapid spread when most medical innovations in the U.S. take decades to become standard of care as memorably described by Atul Gawande in his article Big Med in the New Yorker this summer? One thing about the palliative care field that distinguishes it from other facets of the healthcare system is the willingness of people and organizations in the field to just give away what they know. For free. Because they want as many people as possible to benefit from palliative care, palliative care clinicians are willing to share what they know works best with everybody else. Of course this has only been possible because charitable Foundations have provided the operational support that allowed us to first find, then package, and then give away at nominal (production) cost these hard won tools and best practices developed and field tested by front-line clinicians from health care settings all across the country. But thanks to the charitable private sector, the palliative care field has been able to do just that.
The rapid spread of palliative care has many parents- the data showing better quality of life and better survival; the data showing reduced need for hospitalization; increasing demand for palliative care by patients and their families- but a major part of success has been the fact that people trying to establish and sustain high quality palliative care teams have not had to reinvent the wheel. Virtually every stage of program development; choosing a clinical model, writing position descriptions for staff, figuring out how to pay for the team salaries, language to use in a brochure, knowing what to measure to demonstrate quality, effectively documenting your work in the medical record- has all been packaged and made available to anyone. Not only have these tools been made available, they have been repeatedly advertised to remind the people who are most likely to need help that help is here. In the past health systems have had to pay tens of thousands of dollars to fancy consultants to get this kind of expert guidance- not only has this been unnecessary for palliative care, but individual consultation is not a scaleable change model- too slow, too expensive. Making tools and best practices available on the web- to anyone- has been central to the national spread of palliative care.
By eliminating the need to reinvent the wheel the palliative care field has been able to reduce the opportunity costs of new program start-up, and has been able to set clear standards for quality so that people and their families get the caring and skilled human support they need and deserve.